Researchers and clinicians convene to fast-track cures and advance care
for genetic disorder affecting millions globally
The annual NF Conference, hosted by the Children’s Tumor Foundation, the largest nonprofit organization dedicated to driving research, expanding knowledge, and advancing care for the NF community, will take place in Philadelphia, PA June 21-24 at the Loews Philadelphia. This four-day global meeting attracts leading specialists from across a wide range of scientific disciplines and research and clinical backgrounds, all focused on improving outcomes for patients. This annual event is the most important date on the NF research calendar, and is critical to consensus building and advancing basic, translational, and clinical research in NF and related fields.
Neurofibromatosis (NF for short) is a group of genetic disorders that cause tumors to grow on nerves throughout the body. One in every 3,000 people is born with some type of neurofibromatosis or schwannomatosis, which may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all populations equally; gatherings like the NF Conference are instrumental in advancing this critical and much-needed research.
Organized by Conference Co-Chairs Thomas De Raedt, PhD (Children’s Hospital of Philadelphia) and Laura Papi, MD, PhD (University of Florence-Italy, Careggi University Hospital-Florence), this year’s program (the first in-person meeting since 2019, with virtual gatherings since that time), focuses on growing the NF scientific community, assessing what can be learned from other disease communities, and applying the best of those ideas to NF to facilitate new discoveries and further accelerate the path from discovery to clinical benefit. This focus is represented by the invited keynote speakers from outside the NF field:
- Nevan Krogan, PhD (University of California, San Francisco): Systems Biology: Protein Network Maps
- Sandro Santagata, MD, PhD (Brigham and Women’s Hospital, Harvard Medical School): Multiplexed Tissue Imaging to Reveal the Spatial Biology of Cancer
- John Maris, MD (Perelman School of Medicine, University of Pennsylvania & Children’s Hospital of Philadelphia): Discovering and Developing Optimal Immunotherapies for Childhood Cancers
- David Pang, MD, ChB (Guys and St. Thomas’ Hospital NHS Trust): NF and Long-Term Pain: Neurobiological Concepts and Approaches to Management
Another session of note is NF2 and Schwannomatosis – The Updated Diagnostic Criteria and Nomenclature (Scott Plotkin, MD, PhD, Massachusetts General Hospital), a presentation on the recently announced updated diagnostic criteria for NF2 and schwannomatosis, which was recently published in Genetics in Medicine.
The Children’s Tumor Foundation’s Friedrich von Recklinghausen Award is given to individuals in the professional neurofibromatosis community who have made significant contributions to neurofibromatosis research or clinical care. The 2022 recipient is Jaishri O’Neill Blakeley, MD. Dr. Blakeley is a Professor in Neurology, Oncology and Neurosurgery (Neuro-oncology) at Johns Hopkins University, Director of the Johns Hopkins Comprehensive Neurofibromatosis Center, and Director of the Neurofibromatosis Therapeutic Acceleration Program (NTAP) which she co-founded in 2012 to dramatically shift the landscape of NF1 clinical care via necessary, efficient and expert discovery, translational and clinical research.
To learn more about the NF Conference, view the agenda, and discover options for virtual attendance, please visit nfconference.org.
To learn more about neurofibromatosis and the Children’s Tumor Foundation, please visit ctf.org.
About the Children’s Tumor Foundation
The Children’s Tumor Foundation is the world’s leading nonprofit dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide living with NF, a group of genetic disorders that causes tumors to grow on nerves throughout the body. One in every 3,000 people is born with some type of neurofibromatosis or schwannomatosis, which may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all populations equally, and while there is no cure yet, the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit: ctf.org.
